Over 250,000 Australians already live with ME/CFS, a debilitating disease that most commonly develops post infection. 75% of people affected are women. ME/CFS leaves many unable to work, housebound or bedbound, and costs our economy over $14BN a year.
A Deakin University study suggests up to 325,000 more may develop Long COVID, described by health experts as ‘strikingly similar’ to ME/CFS in its symptoms, pathology, and devastating impact on people’s lives. That’s almost 600,000 Australians who could soon be living with post infection diseases.
Our health system has long struggled to diagnose, manage and create health pathways for those with ME/CFS. We are nowhere near prepared for the number of Australians with post infection disease to more than double in just a few months, and nowhere near ready for the impact it will have on our health services, workforce and the economy.
Australia must act now, before this tsunami hits.
Emerge Australia has been supporting Australians living with ME/CFS for over 40 years. The five most urgent things our policymakers need to address to prepare for the coming surge in post infection diseases are:
Coordination of care and allied support services
NDIS and DSP access and equity
More research collaboration
Updated Australian Clinical Guidelines
We must ensure knowledge from ME/CFS research and the emerging field of Long COVID is shared and integrated.
A high degree of similarity and strong links between ME/CFS and Long COVID offer opportunities for researchers to collaborate.
Emerge Australia, in partnership with LaTrobe University, manages Australia’s only ME/CFS Biobank. The Long COVID Biobank at LaTrobe University would work on cross matching ME/CFS and Long COVID samples to identify the molecular and cellular signatures of both conditions. This would allow researchers to compare patient cohorts and add significant knowledge to patterns of post infectious illness. Such knowledge also has the potential to inform the evidence base for earlier diagnosis and better management of both diseases.
Any new research would be more efficient and effective if researchers focussed on both ME/CFS and Long COVID to design, conduct and analyse evidence. If treatments are found that help people with Long COVID, these are potentially applicable for people with ME/CFS.
a) People with ME/CFS should be used as comparison cohorts to people with Long COVID, in addition to healthy controls.
b) Researchers should partner with ME/CFS and Long COVID patients to design, conduct and analyse research
Underfunded biomedical research lacking patient codesign has contributed to poor health and wellbeing outcomes experienced by post infection patients, especially those with ME/CFS. A lack of funding has also contributed to a relationship of mistrust between patients, researchers, and clinicians. ME/CFS and Long COVD research must involve patients in codesign and recruitment to ensure research efforts are not wasted and delivery of relevant and better outcomes is achieved.
$2,480,000 is required over 3 years for ME/CFS, Long COVID and post infection research into patterns of illness and novel and evidence supported treatments, informed by current research.
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